New PD Forum Moderator

…and it is hypothyroid people who are more likely to have swelling than those with an overactive thyroid.

My feet swell every day, more in warm weather than in cold. It is because I have lousy blood flow in my legs – part of which are the doggone varicose vein’s my kids gave me when I carried them!
Swelling in the legs can come from many things: lousy circulation like mine, thyroid conditionS, certain heart conditions, etc. If this is a new thing, y…[Read more]

Agree with Andrew. It depends so much on how much functional substantial nigra you have and how slowly it deteriorates.  Exercise, diet, and natural supplements may help. I did not immediately start on levodopa when I was diagnosed. Eventually I found out that I functioned more consistently with a small dose. (I could exercise more safely and…[Read more]

When it comes to gene therapy, it’s usefulness in Parkinsons will depend on what you do with it. If you use it to make cells produce dopamine, that is already being done (see 5/25/20 article inn Parkinsons News T…[Read more]

Mary Beth,

Hydration is a great place to start, because it has to be a part of ANY constipation treatment regime.  Traditionally, good bowel function is made up of fiber, fluids and exercise. It’s sort of like a three-legged stool: do without one of these and the whole thing falls over. For some PwPs, having a properly balanced 3-legged stool is…[Read more]

My personal record in the constipation department was 2 weeks with no action.  Miralax, Dulcolax tablets,  Magnesium Citrate…nothing worked. I eat plenty of fiber. I exercise. I thought I was getting adequate fluids because my urine was usually very pale/clear. Then one day I realized that a large proportion of fluid intake was caffeinated. C…[Read more]

The Parkinsons Foundation has a good booklet on diet and Parkinsons. “Nutrition Matters” Here is an excerpt”
<p class=”p1″><span class=”s1″>“Protein in the meal is broken down in the intestine into amino acids. These aminos must travel across the intestinal wall to get into the blood. Then they must cross the blood-brain barrier to enter the brai…[Read more]

I have been on Azilect for 6+ years. I have not changed my diet. I  eat salami, sauerkraut, cheese, drink caffeinated beverages and wine as usual (OK, I’m not a big wine drinker, but I do like my cheese!) I have had no problems. Mike P is correct about Azilect being a selective MAO-B inhibitor and any dietary interactions are not as prominent. How…[Read more]

Hi Cemal!

I have never been on Amantadine, but, like you, I started my PD journey with Azilect. I didn’t see a whole lot of difference except I would occasionally notice my R arm was swinging all by itself when I walked, and I stumbled less. After about 9 mos, my neurologist advised I add Levo/Carbidopa. Also like you, I was very resistant,to th…[Read more]

A number of years ago, a study was done that implied that 1mg/day of rasagiline(Azilect) slowed the progression of PD. Everyone was excited. Then a study was done with 2mg/day – and it did not show any slowing of disease progress. THat said, when I became a PwP, I wanted to take Azilect 1 mg – just ic case it really was a little neuroprotection. I…[Read more]

I can’t speak to economics, but you know there will be price gouging when someone is selling something that gives other people a “high”. It is exactly the same thing “big pharma” does. In reality, both only demonstrate one of the unfortunate qualities of human nature that we all share. Pharma isn’t the only bad guy – it’s in all of us.

For thos…[Read more]

Your safest bet is a medication (pharmacological or naturopathic) that not only works, but has been produced so that you get the exact same bioactive component in each dose, and has been tested to see what the safe dose range is, and also evaluated for both long and short term side effects, as well as interactions with other medications.…[Read more]

Ohmygoodness! Just had so much fun doing a clinical trial this week. They are writing a grant to evaluate the use of exoskeletons in gait training. I got fitted for a very compact single joint exoskeleton and then walked around forward and backward, up stairs, etc, while the exoskeleton boosted my hip flexors so I lifted my knee higher and…[Read more]

Deborah is right, the Michael J Fox TrailFinders is a good place to look for clinical studies. Also, if you have any medical schools in your area, often on their website there will be a link to the various clinical trials they are running. You usually can search by disease or condition.
I am in Chicago, and both Northwestern and Shirley Ryan…[Read more]

Hi Mary Beth and Jorge!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a pos…[Read more]

About participating in clinical trials: We want those new and better treatments. We want something that is neuroprotective. But to get these things, they have to be tried out on people – real people with Parkinson’s. If we don’t, who will? I have participated in quite a few trials – as many as I find for which I qualify. Not for the money, but…[Read more]

The spearmint gum helps me, too. So does a strong cinnamon gum.

Joel, Jean’s article gave some good links to follow for information on photomodulation with NIr. And those have further links to track down. . Here see several to get you started:

Red and near infrared light treatment, helmet based
h…[Read more]

<p style=”text-align: right;”>You’re absolutely right, Jean. Because Parkinson’s is such an individualized disease, there certainly is no harm in trying new things that are inexpensive and have a low possibility for side effects.   However, I want to encourage people to carefully evaluate the type of information they are being given before jump…[Read more]

I followed most of the links y’all gave, as well as the links to other publications that were supplied in some of the articles. I did not see any significant scientific study supporting either light or sound as an agent for neuroprotection (the Holy Grail).There was that article which described a project that people intended to do, and the small s…[Read more]